Tuesday, January 3, 2012

My PCOS story - Dr. Gretchen

Dr. Gretchen’s Personal PCOS Story

Like most of us, my PCOS story really begins in pre-puberty, although I wasn’t aware of it at the time. My mother put me on a liquid protein diet when I was 10 years old because I was a little chubby (i.e., 10 pounds overweight). I was also growing rapidly, and quite active. The liquid protein diet didn’t work for weight loss, but it did set in place decades of eating disordered thinking and behavior.

I went through a period of rapid physical development, and looked like an adult by the time I got my period at age 13. The weight battle that began at age 10 was acted out in all sorts of restrictive eating behaviors (stopping short of anorexia) and over-exercising. I was obsessed with food to the point where I could tell you how many calories a tablespoon of baking soda contained. I thought my problem was all about the food; I had no idea that I actually had an endocrine disorder.

I had irregular periods through my 20s, when a gynecologist told me I had Polycystic Ovarian Syndrome (PCOS), and suggested that birth control pills would help regulate my body. I took one look at the 32-page booklet of potential side effects and said “no thanks!” I kind of enjoyed not having a period most of the time.

In the meantime, weight was a constant battle for me. I stress ate, didn’t exercise, ate whatever I wanted anyway (which was actually pretty healthy overall, except for my insatiable desire for baked goods), and attributed my random and excess facial hair to being German – my Oma had a moustache, so why wouldn’t I have one too? This was pre-internet days, so it wasn’t easy to track down information. No one told me that PCOS was a diagnosis that came with a host of other scary complications, like a propensity towards Type II diabetes and heart disease, not to mention infertility.

I carried on like that, full of self-loathing for my inability to control my weight (I reached a high of 268 pounds) until about age 30, when I was diagnosed as hypothyroid. I started on Synthroid and lost eight pounds without trying – and I got my memory back (memory loss is one symptom of hypothyroidism). It occurred to me that I might have bigger problems than erratic periods. Around this time, I had a series of Pap smears with atypical benign cells, hyperplasia (overgrowth of the uterine lining), and related symptoms that were not terrifying, but were adequate to land me in the stirrups having the first of what became almost annual D&Cs to remove these questionable-looking cells and the build-up of uterine lining. That’s the downside of no periods. I went on birth control pills for seven or eight years after that, and that seemed to improve things. I had semi-regular periods. I was still shaving my face regularly though.

At age 32, I got slammed with a new diagnosis – early onset Type II diabetes. I knew a lot of diabetics, and I knew this diagnosis was really terrifying. I immediately embarked on a program of exercise and dietary modification and lost 70 pounds. That was an improvement, but I still was dealing with all the other PCOS stuff, without really knowing what I was dealing with. I’d had high blood pressure in my early 20s, but resolved it with acupuncture. The high blood pressure returned in my late 30s/early 40s (another very common PCOS effect).

I knew it was a long-shot anyway – after all, someone had mentioned that PCOS might impact my fertility – but, in my early 40s, I tried to get pregnant. I tried for about three years, not going so far as to resort to assisted reproductive technology, but I had the full work-up. Finally, one passive but well-meaning doctor referred me to OB/GYN of last resort – she didn’t want to give me the bad news herself. After waiting for hours to see him, he grudgingly agreed to take me on as a patient, but with warnings about up to six months of bed rest (last trimester actually in a hospital), injectable insulin (possibly for life, because you never know if your body will go back to “normal” after pregnancy), a very high risk of fetal abnormality, probable blood pressure control issues, and a significant risk of maternal and/or fetal death. THAT was enough to get my attention. I decided that dying just to have a baby was not a good idea. My boyfriend and I jointly agreed, “game over.” If I could rewind the clock, and know everything I now know about PCOS, I do think it would have been possible to have a baby successfully. But ultimately, because of continuing gynecological problems, I had a partial hysterectomy in 2009. This flew in the face of all my feminist ideals, but it was the right medical decision for me, and eventually gave me some symptomatic relief.

In the last 17 years, in addition to the weight (I’m still an XL, but a super-active one), the facial hair (strategic laser work and electrolysis contained it), the hypothyroidism (managed very well with a smallish daily dose of Synthroid), and the diabetes (once contained via diet and exercise, now managed with metformin), I also had to deal with multiple cysts, half a dozen of which required surgical removal. The most recent one landed me in the emergency room in the middle of the night in excruciating pain, because it had burst. I still have one ovary, and it’s a PCOS ovary, clearly.

In sum, I’ve had 22 surgeries, innumerable diagnoses, and a real trial-and-error approach to figure out what’s really wrong with my body. And then the process of accepting it, really learning about it, and applying what I know to help my body function better has run in parallel with all of these medical procedures and issues. I had a lot of truly awful medical experiences, pointless and insensitive treatments and assessments, and judgmental people insisting my problem was in my head, or could be resolved if I simply exercised greater self-control. I get it; I really get it.

Right now, I’m “cured” of my infertility, managing my diabetes and thyroid conditions well, have my diet and exercise program in very good order, have an excellent stress management program, and have reached a pleasing level of acceptance about the ongoing and changing nature of this condition. I had my last surgery a couple of months ago, for removal of what turned out to be a pair of ovarian cysts, one on each side. I’m back to a place of relative metabolic stability. Nonetheless, as PCOS is an evolving life-time condition, I wonder what menopause will bring, and then post-menopause.

In Part Two of this post, I’ll talk about why I did the inCYST training, and more about why I became a professional in the field of PCOS.

Gretchen Kubacky, Psy.D. is a Health Psychologist in private practice in West Los Angeles, California. She has completed the inCYST training. She specializes in counseling women and couples who are coping with infertility, PCOS, diabetes, and related endocrine disorders and chronic illnesses.

If you would like to learn more about Dr. Kubacky or her practice, or obtain referrals in the Los Angeles area, please visit her website at www.drkubacky.com, or e-mail her at AskDrGretchen@gmail.com. You can also follow her on Twitter @askdrgretchen.